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Neuroendocrine Cancer Community

Rare : not widely known; not frequently used or experienced; uncommon or unusual

Apr 26, 2023

Rare : not widely known; not frequently used or experienced; uncommon or unusual.

 The mantra of hear hooves, think horse not zebrais greatly contributing to diagnostic delays and poor patient experience” says Dr Lucy McKay, founder of Medics4RareDiseases.The healthcare sector has been challenged beyond imagination in the last few years and has few resources left. With queues for ambulances, and people not receiving basic care, it begs the question of how can we justify spending more resources on rare diseases?”

 Because “1 in 17 people are affected by a rare condition at some point in their lifetime: in the UK alone, this amounts to over 3.5 million people”.

 Because “55% of UK cancer deaths are from rare and less common cancers”.

 And most importantly, because every person living with a rare condition including a rare or less common cancer has just as much right to dignified, well-informed and appropriate healthcare as anybody else.

In January 2021 the 4 nations of the United Kingdom published the UK Rare Diseases Framework, outlining  4 key national priorities: helping patients get a final diagnosis faster; increasing awareness among healthcare professionals; better coordination of care; and improving access to specialist care, treatment and drugs. Further information about the framework is available here

However, the NHS Long Term Plan is less explicit in how it would tackle rare and less common cancers – devolving responsibility to the NHS Cancer Programme to deliver on key ambitions, such as:

  • by 2028, 55,000 more people each year will survive their cancer for five years or more; and
  • by 2028, 75% of people with cancer will be diagnosed at an early stage (stage one or two).

Getting a rapid and accurate diagnosis is of vital importance in order to achieve health service ambitions and reduce inequities in care  – especially in rare disease and cancers : it can facilitate access to treatment and care, provide a possible prognosis, and offer options for future planning. It can also provide a means of connection with a supportive community and open up the possibility of involvement in research including clinical trials. Importantly, a correct diagnosis also ends what, for many, can be a lengthy ‘diagnostic odyssey’.

The complex nature of many rare or less common conditions, including malignancies such as Neuroendocrine Cancers, means that patients may undergo multiple referrals, inconclusive tests, and sometimes incorrect diagnoses before a final diagnosis is reached, during which time both their physical and mental health may be adversely affected. Delayed diagnosis may also mean missing the window of opportunity for certain treatments, resulting in poorer outcomes.

Such an odyssey has cost and time commitment issues for healthcare staff and service delivery too.

Cancer does not discriminate. It affects all of us. . . Yet people with rare and less common cancers can experience … inequalities.

Nobody should lose out because of who they are, the type of cancer they have or where they live.”                            Jane Lyons CEO Cancer52